For STEVE or a MODS Attention only

Hi

I didn't want to start a panic on the forum with this, also I am writing on the laptop and for some reason it will not let me send emails ! I wanted to really let Steve see this first to see if I am being too triggered by this whole suggestion as it could be something or nothing.

I don't know if you folk can help with this at all but I am worried. A disability YouTuber that I follow ( I do like them - don't always agree with them but for the most part they add value ) made a recent post where they had received a letter from their MP ( the letter was shown with the content creators name etc redacted - the letter was real, I know because I have had the similar letters from my MP ) The letter was asking the creator to take part in the Timms Review by submitting the online form that people can submit and obviously Organisations like yourself. This particular YouTube creator has a very serious and chronic condition and claims PIP.

My fears and a very real feeling of ''oh no way'' came when this creators MP asked in his letter, whether it would be a good thing if the DWP could have DIRECT DIGITAL access to a claimants NHS medical record. Some people in the comment section said that might a good idea, however, an awful lot of others myself included said no, no way would I be comfortable sharing my whole NHS Record directly to any Government agency never mind DWP. This needs to have a massive discussion around it I feel but how do we even get the subject raised ? I came to you because I trust this site and have done for over 13 years. I am very worried about all of this when it comes to direct digital sharing of NHS records with no Human to filter out the parts that are unnecessary and have no bearing on my PIP claim or my entitlement.

I noticed from comments that people were saying things like, ''well you need medical evidence to claim PIP so what's the problem letting them see''. ''We give permission for them to contact your GP or health provider anyway''. I tried to reply by saying, there is a massive difference between giving DWP permission to contact your GP, then DWP sending your GP a short form with a few questions to answer, and DWP having a direct link to your full NHS medical records ! I don't know, is it just me that feels this is something we should not be entertaining ?

My GP records on my NHS app and on referral letters, an attachment on the referral letter, is shambolic to say the least. Digital access for DWP might be ok, I guess if you have one or two chronic conditions and you were not born nearly seventy years ago. Most of my medical records were paper based that used to be kept in those little brown envelopes. Since our GP's are rapidly relying on digitalisation I have found quite a few of my chronic life long conditions aren't listed anywhere, not on the app nor the referral letters, yet all were diagnosed by Hospital Consultants. Just this last week I had to ask my surgery to please move one of my conditions to the ''Active'' list as it had been listed as ''Past'' yet this past condition I am still being treated for via my repeat prescription every month. I did get a text from my surgery apologising and saying its all to do with the EMIS Coding and mine had not been coded correctly ! This condition is one of the conditions that is imperative to my PIP claim, can you imagine if DWP had direct access to my records, that condition would appear as if I no longer suffer from it. If my GP surgery cannot get coding right how the heck will DWP ! I fear this whole direct access would be horrendous for many many claimants not just myself. I know I can do a SARS for my records but who wants to, or has the energy to sift through 70 years worth of records, I would not be in a position to do that and then in the end it would be me having to try and get my GP to actually have the time to even consider rectifying my digital records. It cannot just be me who has an awful feeling about this surely. I always have submitted, to PIP, the relevant parts of my medical records to back up my claim along with a detailed form following all the impecable advice from you folk here.

I have reached out to my MP about the above, I am sure they will respond with the usual rubbish as always. I am really worried about the path DWP are looking at taking, I never ever want to share my whole NHS record with any authority. Its my whole medical life in those records and it should be my choice whether I want to share even one page of it or not.

Thank you so very much for reading this very long winded post, you folks have always been such a great and honerable support to so many over the years.

Best wishes
Beverley